the rabbit hole

I don’t want to go. I tell them again and again. “NO!” I yell. I am firm, indignant. I use that Mama voice, the one that says I’m not messing around, damn it. I tell them that I’m staying put.

But they don’t listen. Or they don’t care.

Come, rest here a while, Jess. There, there, they say. No one will notice if you take a minute or two. And it’s so warm and cozy here in this rabbit hole. Come on in.

I don’t want to go.

But I peek over the edge.

Damn, it really looks cozy in there. And ooh, look, my friends are in there too. It’s like a party. But, well, ya know, the really sucky kind of party – like the one that your mom made you go to when you were a kid and you had to hang out with the great-aunt with the bad breath and the dress that smelled like moth balls and she made you walk around with her the whole time so that long-lost cousins you’d swear you’d never seen before could tousle your hair and make you hug them until you couldn’t breathe. Or you know, something like that.

I read the words. Four sentences buried in the summary of Brooke’s neuropsych report.

Four sentences.

The gap between the demands placed on her and her abilities is growing, which in turn is having an emotional impact on Brooke. The difference between Brooke and her peers is increasing in size with regard to the social, cognitive, and academic domains. This often results in an anxious, irritable, and very frustrated child. Brooke is putting forth her best effort, but she is quickly overwhelmed by demands placed on her.

Four words in four sentences that so perfectly describe where my girl is right at this moment.

Anxious

Irritable

Frustrated

Overwhelmed.

Four words in four sentences that so perfectly describes where I am right at this moment.

I stay above ground for as long as I can. I claw at the dirt and I kick back the rabbits and I plant my feet and then .. well ..

And then I get tired of fighting and I say screw it and I jump in head first and I watch the earth go hurtling by at a million miles an hour as I head down, down, down, down the rabbit hole.

And land with a thud.

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52 thoughts on “the rabbit hole”

I can catch you when you land. I’m right down that very hole, too. Those sentences could have been written by Nelli’s doc. Nelli herself has said more or less the dame thing – it’s too hard. They want too much these days. Why do all the other girls seem to suddenly KNOW things I don’t and care about things I don’t and not like the things we all used to care about anymore? WHY do people keep asking MORE from me when I’m already trying so HARD? Don’t they see how hard I’m working? Hyperlexia sucks sometimes…

Dont spend.too long down there with Brooke. You have the strength to pull the both of you out of there. .You are her best and most important example of how to overcome those four hideous words. You do it every day.

I’m so sorry. You know we all know this, are here for you to keep you company there so you can cry and scream, and then we’ll help you back out again. Just like you do for so many of us. Love you and Brooke always.

We get it. We KNOW. Stay as long as you need, take a moment or two or five to recollect, and then climb back up mama, we’ve got our hands held out for you. You are strong and fierce, even if you don’t feel it at the moment. xoxo

I’m sorry. This is so similar to what my sons teacher said to us last night at the parent night about how he was in class, so I feel your pain, I think all parents of a child with asd do. Hang in there.

I know where you are right now, its the worst feeling! JP was at that same point at that age, Its as if your in a car and everyone else is cruising along and you just cant get that gas peddle any further to the ground to keep up! But I will tell you…. the gap will close and she will make those leaps and bounds you talk about. And it will all happen again in a few years. It sucks, REALLY sucks! I try to focus on the fact that JP (and your Brooke) have so much that those other children don’t yet totally get. They are compassionate, non judgmental, open and are fine with who they are. All things that the other kids may never have. And its those things that will be such a bonus when they are all 20 years old and developing the relationships and life experiences that really matter.Everything else will come with time, just not at the same time! Head up girl! You have a pretty amazing girl ( well, 2 pretty amazing girls). This tough time too shall pass…. well at least hide in the closet for a bit!

I’m so sorry, Sweetheart! Even though you explained this when you first read the report, it never gets easier. On a lighter note, did I really drag you to anything like that? If so, I’ve managed to block it out. Or does it just make for a good story?

What an honest and true posting. I have been down that hole, I feel myself heading that way right now. On the edge… It doesn’t help to have company, but I’ll hold your hand. Take some time to grieve, then eventually, sooner than you think, you’ll be back on the horse, even if once again temporarily. God Bless you guys and hugs to you and to Brooke.

That is alot to digest. Remember that this person does not see Brooke every day, nor would they be able to reproduce her daily successes through some standardized test or evaluation. But I know how hard it is to see things like that written about your child and I am so sorry for what you are feeling right now. Try to think of the wonderful time you two had seeing Godspell and how meaningful that was for both of you. There is no neuropsych report that can unravel that magic.

Ach, those reports, those words. They always gave me that out of body feeling – my brain would spiral into hysterical numbness while my heart shrank with fear. There is something so cold and hard about seeing it spelled out – any reasonable person would flee. But they are four words that are simply a snapshot of your daughter at a moment in time- they don’t define her or her life’s arc any more than any snapshot defines anyone completely.

Complex. Tenacious. Brave. Unique. Four more words that I bet describe her just as well.

sigh. I was told this week after meeting with the CST that my son suffers from a considerable amount of anxiety over the “rules he’s created on his own” and that he appears to have no friends. When we asked him who his friends are, he went told us “I play by myself mommy. Those other kids don’t like me.” Then he went into the playroom and played with his trucks.
Makes you really hate people doesn’t it??
(((HUGS)))

I am trying to climb out of that damn hole right now….trying to find the strength. I will…you will…sometimes it just takes a little time. I completely relate to this post…we are in the midst of something similar right now. All 4 of those words were used in my son’s IEP meeting last month. It stinks, but somehow we always find the might within to overcome. Hugs for you….

I too am sorry for all you’re going through. I hate reading sentences like those four that are true for where your child is at the moment and in some ways it’s a validation that you just don’t want. Perhaps some good will come of this and some services can be done to help bridge the gap and help Brooke.

Remember to look at the little pieces one at a time and you will be able to climb out of the hole. Little pieces are easier to overcome but the “whole” picture can drown you. It often feels hopeless when we look at the forever rather than today and perhaps only a little of tomorrow. She needs your strength as do we all so pull it together and take it a little piece at a time. You will overcome the demons and so will Brooke, one demon at a time..
Love you,
Dad
ps. this was so hard to reply to but I thought about it one little piece at a time,,,,,,,,

You will make it through this just like always. I know you will. The doubt and fear and anxiety in those words cuts like a knife. I’m so sorry you’re hurting and I am there with you in a virtual hug.
And that gap they speak of…well….remember what you said to me just yesterday?

reports can frighten us SO much…and try to crush any hope that was growing. you see the BIG picture, though, and deep down (even in the rabbit hole) you know there is much MORE to your baby girl, than what any report can fully capture. Hang in there!

I’ve found that the time in the rabbit hole is when I can sort through all of the information and figure out what to do next. We know our kids are not developing normally, we know that it makes them anxious, frustrated and irritable, so these reports are only a confirmation. Too bad they don’t come with the instructions to get out. But the rabbit hole does. The climb out of it is what enables us to take the next steps, to seek out the people who can help us, to figure out that the paper aversion due to sensory issues is turning out to be seasonal and part of dry skin, so pull out the brushes. Oops, sorry, that is our newest revelation today.

I’m beginning to notice that with every climb out of the hole, I’ve been filling it with dirt so the next time I fall in, it isn’t as deep. Keep digging out, one day we will get there.

We are here for you Jess! Come back out! I hate the reports, they do not know our children like we do, yet they write their “thoughts” on the paper for eternity. I love what your dad said, a little at a time, kind of like the AA slogan, lol, one day at a time. Look back at the progress before you are overwhelmed by the future, and just keep loving that baby girl, it will work out!

I used to be terrified of the rabbit hole. I called it that, too. And, with some great help, I realized that I was so terrified because I was scared I’d be in there forever. But I realized that wasn’t true at all. I needed to learn to respect every feeling I had – I had to sit with it and give it space.

Sending love while you’re in it and a big push out when it’s time to leave.

Snuggle up, take a nap, then GET THE HECK OUT!!! Life is not about hiding, it’s about living, and whatever any person writes up in a report does not change your beautiful baby. She is still the most wonderful child and you are blessed to get to be her Mommy. She is no different after you read these words than she was before. Do not give them the power. Live in the Godspell moments and work to reduce her stress. It took me many years until I realized there is no amount of therapy that will make this go away. The most we can do is let them grow at their own rate and keep the stress OUT. The anxiety of daily life is already great enough without adults trying to make them keep up with their age group. Adapt, Modify and Love…..love is all you need. It’s a pep talk for me too, I need constant reminders.

I am so sorry Brooke is going through this, as well as the rest of your family. Be strong, and continue to fight for her (which we all know you will). I just sat through my son’s IEP meeting. Where I see progress, they see more distance between peers in his class/age group and the distance is growing. Just means we, as parents, continue to fight! Hang in there and we all are here for you.

The evaluations and reports are always hard. Even when you know what they will inevitably say, it’s still hard to hear it face to face or see it written there in black and white. You go in to them with such hopes, that these strangers will recognize and acknowledge all of the hard work and effort that has gotten you to where you are today, see all of the amazing progress that really has happened (think Godspell and how incredible that journey was for her). You never want to hear about how far you still have to go. But you guys will get there. Brooke has made amazing progress, and she has an incredibly strong and loving family right there with her. I can’t wait for the day when I read the post about how Brooke proved yet another doctor wrong. Don’t forget about that. She’s done it before, and she will do it again. Hugs and love.

Oh Jes (((Hugs))) We have all been there! But ya know, those realizations made me *realize* alot ..and when my son was 7 our world changed because I knew that just trying to get both my boys to *do* something was not helping their track to *catch up*. I realized to catch up socially, cognitively and even academically, I had to address development not just condition my kids through behaviorism. Last month preliminary research was released showing leaps made by single case studies of children catching up ( gains from development) at double ( or more) the rate. It took my son starting at the end of 7 until 13 to catch up…but he is there!! ( SO no all the research I need is my kid but I realize many people need more :)) My younger son is getting there for sure…gaining 2 years for every year we work on specific developmental goals!! I say all this because I definitely want to hug you and say I understand, but I also want to say NEVER let the current state of what professionals tell you deter you to know that there is ALWAYS something to do. You may need to look at things you never thought you would….just like me. What those words did for me was made me realize I had to go a different direction or my babies would not catch up! I will be posting a blog about the research presented and well, your blog here is the perfect example of why this is so important!!! MORE HUGS!!! Part of the reason I became a professional in the field is exactly this reason. I would be really wealthy if I had a dime for every parent who called me with a child 7-8 and up ( where those gaps really are non compensative any longer) saying the exact issue… Please know that I am here for you to bounce off ideas!! Kathy

i hate that place you’re in. hate it. probably b/c i have yet to figure it out. i know the perspective i should take, the perspective i’ve seen in others as they fight, the perspective that looks strong and in control and responsible and even a little enlightened. but i’ve yet to get there. i get tired of fighting as well, as you may have noticed. yes, i definitely hate it.

(is it insensitive to say how much i adore your writing, though? absolutely beautiful.)

Jess…I’m sorry you are falling in the hole. It is such a scary place to be. I am there right now myself….and while they say that misery likes company….I don’t want anyone to have to be in that same awful place I am in right now…I don’t wish it upon anyone.

I am not sure what grade your daughter is in but this is what we typically see by around third grade. The gap gets very wide and the lack of social skills and theory of mind skills are overwhelming to the child resulting in the inability to keep up with demands all around. I personally think the intensity of these skills is not worked on nearly enough. I see kids fail time and time again in these domains not because the gap couldn’t have been closed, but because the objectives are just not refined enough. I would look into having a CARD consultant come in and evaluate her and her program to make certain she is in the right placement. I know the school will tell you she is and that she is getting everything she needs and many parents resist an independent eval. but it is vital. I tell parents, as an advocate, get an independent eval. in the classroom, at home and in the community every year by a BCBA highly trained in the theory of mind domain.

Yes, we’re living it too…..and we’re only at the first grade level. I’m already looking out for the day when I think that gap is going to be too big for her to sustain being in her current peer classroom. We live outside of Nashville and there is an excellent school here for kids just like ours. (Or so I’ve heard it’s excellent, and it damn well should be based on the price tag.) It’s called Currey Ingram and I know they have students from all over the country and world. If you ever want to look at it for Brooke, you have a place to stay with us! Or, if there are any similar places in the Boston area, I don’t know. Speaking of which, have you looked into therapeutic riding for Brooke? Shea did a week summer camp at Lovelane in Lincoln and it was fabulous and did wonders at helping her anxiety levels.

with a neuropsych coming in Dec for my boy this makes me think back to our first, the one with the diagnosis. It’ll be 5 years in March and I remember like it was yesterday. We had no idea what we were getting into and although he has come so far, each year brings new challenges to work on. So sorry that you are hurting, thoughts will be with you today, thank you for sharing so honestly.

My neuropsych for my son old says: “As children with Elliott’s difficulties grow older, the earlier modes of promoting their social skills – providing times of integration and inclusion activities with typically developing peers – become less relevant due to their increasingly deviating trajectory from normative development”……..

My son is 15 years old but he is 10 years old on the inside. Because his peers don’t have autism the gap just keeps increasing BUT that is OKAY. It is ok to lessen the demands and provide her with the individualized education that meets her needs where she is at. My guy is great friends with an 8 year old boy – they have the same likes and interests and thankfully the 8 year old is sweet and kind like my big guy is. The gap is always going to be there but our kids will move the gap in there own time. I’m further along on the road Jess and what I want to say from where I am on the road is it will be ok. She will progress and actually thrive sometimes but it takes more time than those pesky neurotypical peers who they are measured against. (no offense intended) Our kids can only be measured by their own progress. Look at her progress in the last 12 months. It has been well documented here on the diary and it has been amazing!

Sending you love and prayers Jess and I’m tossing a really long ladder down into that hole. xoxo

I’m so sorry that you are struggling. Understanding “WHY” this is happening to all of these children and all of these families is making that rabbit hole very uncomfortable. The grieving process becomes cyclical and we all dive into that rabbit hole again and again. Cry. Let it out. Be angry. But, do not lose site of LIFE.
You were made to become a voice for so many of us Moms. You have a beautiful gift for writing and expressing how so many of us feel each and every day.
This song sung by Brandi Carlile reminds me of how all those worry lines across my face reflect the journey that I have been on. You were made for us all Jess. But know, that we are here for you too!

I feel like that dealing with my son’s IEP and school issues right now. It seems so daunting. School is making everything worse and I feel like at times we both are falling down the rabbit hole! Thinking of you and hoping it gets better.

Just think back to the very first report you ever got on Brooke and the things they said she would NEVER do or overcome…. she HAS and she will. We are all here with you fighting and sending you our powerful prayers. You WILL get our of the rabbit hole, you will do it for Brooke, because you ALWAYS do. xox

I’ve had very similar feelings after sitting through my granddaughter’s IEP meetings. It wasn’t that they didn’t understand or appreciate her. It was that they put into words the fears that were too overwhelming for me to dwell on. In order to function here on the front line and keep putting one foot in front of the other, day after day, I have to believe in and keep my focus on the progress that we’re making. Being told that the gaps are widening (even if you know it in your gut) is incredibly demoralizing. I’m so sorry you’re hurting. I know you will find your own way to a place where you can breathe again and I have a feeling that a little girl’s brilliant smile will help you get there.